Immune System! The ever-present, ever complex immune system – a place of so many hopes in CFS and such a tough nut to crack. In his opening address for the Infectious Pathogens section Dr. Montoya pointed out how inconsistent study results have made it difficult to get a handle on what’s going on. The natural killer cell dysfunction findings are solid and there’s a good deal of evidence for an inhibited Th1 and a dominant Th2 response but inconsistent results across major parts of the immune system (T-cells, tumor necrosis factor (TNF-a), IgG levels, IFN-y) have made it difficult to understand the role the immune system plays.

(A recent review of the topic stated : Despite many years of intense investigation there is little consensus on the presence, nature and degree of immune dysfunction in this condition. However, slightly increased parameters of inflammation and pro-inflammatory cytokines such as interleukin (IL) 1, IL6 and tumour necrosis factor (TNF) α are likely present. Additionally, impaired natural killer cell function appears evident. Bansal et. al. 2011 Chronic fatigue syndrome, the immune system and viral infection)

The multicenter study being coordinated by Columbia University virus-hunter Dr. Ian Lipkin is considered by many to be the definitive study of XMRV/MLVs in CFS. Dr. Lipkin issued a statement on Dec. 28 to clarify the nature and scope of this study.

This letter is written to clarify the status of the XMRV/MLV CFS/ME study I am coordinating at the request of the National Institutes of Health. Although frequently described as the “Lipkin Study,” it is in fact the Alter, Bateman, Klimas, Komaroff, Levine, Lo, Mikovits, Montoya, Peterson, Ruscetti, and Switzer study, designed by these 11 investigators to bring their best methods for case ascertainment and characterization and state-of-the-art molecular and serological diagnostic tools to address the question of whether a retrovirus is associated with disease. My role in conjunction with Mady Hornig and Bruce Levin at Columbia University is to ensure that the study represents an appropriately powered, definitive, representative sample of CFS/ME patients across the United States;

The Alter/Lo retraction deepens one conundrum as they reported that extensive tests for contamination tests still failed to find any. Their retraction rested on

Their inability to find the MLV’s in the same patients they found them in before (as well as other CFS patients) in the Blood Working Group study

The inability of numerous other laboratories to find evidence of MLV’s (6 labs in the BWG study and others in published studies)

Their and other labs inability to find anti-XMRV antibodies, XMRV virions, or viral integration sites in patient samples that would confirm their original findings.

The lack of a match between the MLV’s they found in stored samples and in the same patients over a decade later. (This was known at the time of publication but for some reason was not released. Reports at the time suggested that the present day MLV’s sequences were descendants of the earlier MLV’s found but this was not true.)Their inability to give any more of the original samples to other labs.

Mikovits Back to Work on ‘XMRV’; Partners with Ruscetti to Work on Lipkin Study

Dr. Mikovits legal troubles continue but she’s back at work on ‘XMRV’. On December 15th Nature News reported Dr. Mikovits and Dr. Ruscetti will finish the 2.3 million dollar Lipkin XMRV study funded by the NAIAD. Researchers at the NIH, the FDA and Dr. Mikovits and Dr. Ruscetti will make up the three arms of the study. The study was originally slated to end at the end of this year but Lipkin reported that only about half the samples are ready to send to the researchers.

Lipkin stated he was convinced the original XMRV findings were due to contamination but held out the possibility that Dr. Mikovits was finding other related viruses that no one else has been able to detect.

In CFS A Novel blog http://www.cfsnovel.com/blog/?p=409. Caroline Anderson reported that in a telephone interview Dr. Lipkin stated he had worked hard to keep Dr. Mikovits and Dr. Ruscetti on board his pathogen studies.

“I have gone to great lengths to make sure they remain involved,” Lipkin said in a telephone interview.

There’s just no getting around universal laws. They’re like gravity – you cannot like gravity, you can protest against gravity, you can pretend gravity doesn’t exist but as soon as you roll out of bed there it is – gravity.

The Buddhist law of impermanence – that nothing is permanent – that everything changes – is like that. Is suggests that you can’t count on anything…and you really shouldn’t try because at some point it’s all going to disappear anyway. Your health, for instance, is going to disappear completely at some point. That’s a guarantee! There are no other guarantees; there’s no guarantee, for instance, that while you live you’ll be healthy or without pain or live in the circumstances you wish. That guarantee, unfortunately, did not come with the package.

At the end of the chapter Toni refers to ‘broken glass’ practice which is based on the realization that we are all glasses which will eventually be broken; i.e., brokenness or ‘ill’-ness is baked into and is an inherent part of being human. It may come earlier or it may come later; it may last a long time or a short time but it’s part of the package; if you’re human you’re going to have to deal with illness, physical decay and parts that don’t work the way you expect them to.

Given that we are physical beings; i.e. we operate in a physical world, it stands to reason that some part of us are going to have parts that don’t work very well, and, of course, we know this to be true. At any given time, for reasons of genetics, ‘accidents’ (bumping up against a pathogen at the wrong time), aging – whatever – a pretty significant portion of the human race has some parts that don’t work well.

The journal Science on Thursday fully retracted a controversial study that had linked a mouse leukemia retrovirus to chronic fatigue syndrome, a disabling illness affecting an estimated one million people in the United States.Some data in the study were retracted in September when the Cleveland Clinic, which participated in the initial research, reported that its findings had resulted from laboratory contamination. The notice posted by Science on Thursday cited additional concerns about the research, although the wording made it clear that not all the original authors agreed to the retraction.“The majority of the authors have agreed in principle to retract the report, but they have been unable to agree on the wording of their statement,” wrote the editor in chief, Bruce Alberts. The journal was therefore “editorially retracting” the study on its own, he wrote.The study, published in October 2009, had been hailed by people with chronic fatigue syndrome as proof that their condition had an organic rather than a psychological origin. As a result, some patients began taking antiretroviral drugs normally used to treat H.I.V.in hopes that they might work against the suspected retrovirus.But subsequent research failed to support a link to the mouse retrovirus, called XMRV, although one study found an association with related mouse leukemia retroviruses.The retraction caps a tumultuous two years of research into chronic fatigue syndrome and represents a surprising twist in the career of Judy A. Mikovits, the senior author of the Science study and former research director of the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev.

We have written to over 160 people in positions of influence to publicise the forthcoming screenings of Voices from the Shadows. Leaflets have also been distributed to support groups in and around Norwich and London.

The Chief Medical officer of England has declined to attend or send a representative to our BritLib screening.

- and still we are looking for new avenues to explore to allow the opportunity of the film screenings to raise awareness of ME.

Please support these screenings if possible by helping to gain interest in attending or by making your local GP/MP/local newspaper aware of these events.

London Discussion Panel

Dr Nigel Speight will be participating in the panel discussion.

Dr Nigel Speight was a consultant paediatrician in Durham for over 25 years. He has seen a large number of cases of childhood ME in his own area and has frequently been called on to support cases of where children have been treated poorly by social and healthcare services. He has played a major role in rescuing children from care proceedings and is well qualified to comment on the state of treatment of ME patients.

Dr Speight presented at the 2nd Invest in ME International ME/CFS Conference 2007 in London (click here) and is considered to be one of the most experienced ME consultants in the UK.

Recently he has participated in the creation of the International Consensus Criteria for ME to allow diagnosis of ME.

Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions. To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

Last week a notice from the University of Miami stating that after 27 years Dr. Klimas’s doors at the University would close sent something of a shock wave through the ME/CFS community. The idea that a significant CFS researcher, physician and advocate had perhaps lost her academic base was more than disturbing – but that announcement turned out to be nothing but a prelude to the really big news; it turned out that University of Miami didn’t let her go at all – Dr. Klimas left them for greener, much greener pastures.

In fact Dr. Klimas was given an offer – to form a Neuro-Immune Institute at Nova Southeastern – that she couldn’t refuse. Dr. Klimas had a good run at the University of Miami; she had a clinic on campus and a lot of CFS research flowed through her doors there but this is something else indeed. In her release to her patients she called this a ‘once in a lifetime opportunity’

In summary, we were unable to detect any evidence of XMRV or MLV infection in any of the 115 examined study participants, regardless of whether they were suffering from CFS or represented healthy controls. The 58 CFS patients enrolled in this study were carefully selected according to the Canadian Consensus Criteria for ME/CFS. Positively screened participants were only included if they showed symptoms in at least two categories of autonomous, neuroendocrine, and immune manifestations. The sensitivity of our assays reached copy numbers lower than 120 copies/ml of plasma for the detection of viral nucleic acids, and 103 copies/ml of plasma for the presence of infectious particles. While it is possible that XMRV and MLV are not predominantly blood-borne viruses and as such exist below the detection limit of most assays in plasma and whole blood, we believe that the assays used in this study are equally sensitive to those reported in previous positive studies. Moreover, our broad study design and the use of degenerate primers with specificity for highly conserved sequences in different MLV-like viruses and XMRV would have allowed us to identify nucleic acids, infectious particles, and antibodies for a number of related murine retroviruses. However, we could not detect any other murine retroviruses in any of our specimens, unlike the finding of MLV-like sequences reported by Lo et al. [6].

It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not innovative. They are determining if ME/CFS patients brains are functioning as anerobically as their bodies seem to be if standing up causes a flare of free radicals that causing you to tip over, grow dizzy or at the very least ditch several points of IQ if exercise causes CFS patients gut microflora to go bananas – spiking an immune response – and causing post-exertional fatigue if exercise causes sensory, immune and endocrine genes involved in pain, fatigue and blood vessel functioning to spike resulting in pain, fatigue and you know the restif immune and other gene expression networks hold the key to subsetting CFSa computer program that develops novel theories for CFS using existing research